MS in all its glory

LittlemsSkelly

Hi all,

I've being doing a lot of thinking lately (some may say too much) about what my future may hold, and as with many things in life there is a level of uncertainty that comes with that. But what is most uncertain is what is going to happen with this giant pain in the ass called Multiple Sclerosis.

When I was diagnosed boards was a great source of information and the personal experiences of others truly helped so I was wondering if anyone was willing to share some of their experiences with it in this thread for those who are in the same position we were all once in? The good, the bad, the downright ugly!!!

For all my fellow MS'ers out there and family's of those with MS if you feel at all comfortable please post how good, how bad, what you can/ can't do, if you want a rant or moan, we all need to vent

val444

Hi

I am expecting a diagnosis of MS next week when I return to the neurologist. From my last visit, and the conversation we had about various treatments, etc, I don't think there is any hope of it being anything else. Having said that, half of me thinks that this has all been blown way out of proportion, and actually, I am fine. I vary between being certain I have MS, and being just as certain that I don't.

Neurologist is very blase about the whole thing, but I think that is because when I am faced with something, my immediate reaction is what are the next steps? What tasks can I complete? Is there anything I should be doing...etc. The tears and worry only come later, when I am on my own. So in the neurologist's office, I appear to be handling things very well, and so I am treated like someone who is coping fine.

I do think the scariest part of the whole thing, (besides lumbar punctures!) was when I was told that there was "differences" on my MRIs, but not to worry, it probably wasn't cancer! I hadn't even thought to worry about cancer til right then!

It appears that the bedside manner of some consultants leaves a lot to be desired!

LittlemsSkelly

Hi Val,
The reason I decided to start this thread is because I have honestly never felt so well other than the tiredness and wanted to get personal experiences from others for myself and others who may be in the same situation that you are now in and I was in not so long ago.

I was pretty much told last May (2 months after onset of initial symptoms) that it was MS. Had been to see an ophthalmic surgeon who though it may have been a tumour so MS was a massive relief. Got the official diagnosis in December 2010 and started treated. All the neurologists and nurses I had spoken to have said that the first year of treatment is the hardest, and there will be times when those injections absolutely floor you, but I can not say this enough, it is amazing how quickly it will become a very minor part of your day to day routine. Each injection has its upside and downside, I'm on Betaferon (inject every second day) and I have encountered no major problems.

I'll give you a bit of perspective that I wish someone could have given me last year. On this day last year, I was being 'held against my will' as I called it (I'm very dramatic :rolleyes:) one day post LP, dying to go home, was hooked up to and IV for steroids as I could barely see and hadn't been able to see since April 2010 (severe optic neuritis), docs had just told me I would get so sick over the next year that I should defer my final year from college, I cared for an elderly relative, and worked 30 hours.
Here we are one year later to the day, I am going into my final year of college in 2 weeks, my vision is better than ever, I eat healthier and have lost 3.5 stone, I haven't started taking vitamins yet but will soon because my nurse is one visit away from giving me a hideing if I don't.... I still work the same, my job involves a lot of physical activity and heavy lifting so I'm being lazy when I consider that my exercise but I'm going to start yoga as it's supposed to be very good for flexibility later on, and sure I'm still only a baby .

So although things may look bleak for you now and the future uncertain, things really can only get better. Remember I literally was the blind woman who can now see. They'll be times where life kicks you in the teeth and then picks you up by the hand and the only thing you can do is roll with it.

The only thing you're meant to do is live your life. I need to make a decision about what to do after college and people who I've spoken to say 'but you're sick, you cant do x, y, z '. I do not look sick, act sick, I'm an intelligent person who can do or be whatever or whoever the hell I decide to, and refuse to be defined by some illness. I would be willing to bet that this time next year, you will be 100 times stronger a person than you are now and it is because you will have gone through this experience, and honestly, its really not that bad. If you need to cry, cry!!! Scream the bloody house down if you want to, its not fair, none of it is. But consider the amount of other illnesses it COULD have been. MS is not fatal, in most cases it doesn't decrease life expectancy and you might actually end up being healthier because of it. I still go out and drink, I'm not an advocate for some all natural diet, I ate a KFC today (very bold :eek:) because I was hungover in fact so perfect example.

So don't look at this diagnosis as an ending of something, look at it as an opportunity for change. Do something nice for yourself!!!!

barrackali

Well I was diagnosed with MS back in September 01, I'm not in a wheelchair so I'm happy with that. I have lost count of the number of my admissions into Beaumont, treatment is always the same, 5 days of IV steroids and a bunch of hitler-like physios.

Personally the worst thing is that I know all the staff in the wards I stay in....hate that. At the moment I am on no treatment for MS, I have tried all of the front line treatments with varying results (and I mean all), last time I was on Elan's Tysabri....it made my face so swollen it was unreal, I also felt like cr*p on it.

The MS is progressing for sure, but on a good day I can hit a 3 wood 317 yards..that ain't so bad. I go through spells where I can't sleep at night due to muscle spasms and facial pain, I'm also completely numb and severely weakened on my right side.....I must be generating my golf shots from the left side so

nedsgarden

Val, i too am waiting to see the neurologist and wish you all the best.

LittlemsSkelly, a very positive piece of writing and i believe as in all aspects of life your optimism is a very powerful aide. You appear to have it in spades.

LittlemsSkelly

Hello to the both of you,

Thank you @nedsgarden, even my neuro was a bit worried when I didn't get upset by the diagnosis, but on the scale of things, it's pretty low down. Good luck with your results whenever you get them, if you ever need a pep talk hit me up :cool: When do you expect your results? Is it looking like a positive diagnosis?

barrackali have you had any recent MRI's to check for more lesions??? I suppose you've been through the ringer with regards to all the injections / chemo etc? Christ can't even imagine. I'm grand, not a bother and I can guarantee you if I so much as picked up a golf club I would somehow smash myself in the head with it so at least you're going strong there.:D What did your neuro say when you decided to stop treatment? Did you start off as Relapse Remitting, and did you have any of the symptoms you have now originally? If I'm over stepping, please don't hesitate in telling me to shut my gob!

My mam cried (as mammy's do) when she heard about the MS and the first thing I said is 'well, at least if I end up in a wheel chair I can get a nice pink sparkly vanity plate'. Needless to say she was not amused....

longjohnn

Can anybody here recommend a good Neurologist who specialises in ms. I was diagnosed with primary progressive in 2009. At that stage I only had a slight limp. After giving me the news he asked would I like to go on steroids(as if I would know) he gave me a prescription and told me to make an appointment on the way out.
My GP was unhappy with this an made another appointment with a different Neuro in Dublin who did a lumber puncture among other tests. He confirmed it was primary progressive. Over the course of 18 months I had 3 private visits to him the last one being last November where I was walking really badly as the ms which had started in my right leg haad spread to my left. On each visit I had made to this neuro he always told me to keep exercising and kept telling me that I wasn't getting any worse when I knew I was.
I then got my GP to refer me to a different Neuro outside of Dublin that was recommended who I first saw as a public patient in February. He brought me in to hospital in April for a course of iv steroids which helped a bit. I didnt get called back to him till the beginning of August, waited 1 and half hours and didnt even get to see him just saw one of his team instead didnt ask me to try walking and ended up giving me a script for a muscle relaxant and told me they would see me in October. Then yesterday I was sent an outpatients appointment for September 2012. I thought it was a mistake and had to ring but it was right. That Neuro doesn't see patients privately so I have to go public.
Now I don't know what to think but I know one thing I want to change Neuros. Somebody said I should try to get in to the ms clinic in Beaumont so my GP sent them a letter last week but It could take a long time to get in. At the moment I feel neglected.I am just barely able to walk, ok around the house where theres walls but outside I have to use a wheelchair or in supermarkets a shopping trolly for support.
If anyone can advise or recommend a Neuro maybe they could PM me as its best not to put peoples names on here.

barrackali

LittlemsSkelly wrote: »

Hello to the both of you,

Thank you @nedsgarden, even my neuro was a bit worried when I didn't get upset by the diagnosis, but on the scale of things, it's pretty low down. Good luck with your results whenever you get them, if you ever need a pep talk hit me up :cool: When do you expect your results? Is it looking like a positive diagnosis?

barrackali have you had any recent MRI's to check for more lesions??? I suppose you've been through the ringer with regards to all the injections / chemo etc? Christ can't even imagine. I'm grand, not a bother and I can guarantee you if I so much as picked up a golf club I would somehow smash myself in the head with it so at least you're going strong there.:D What did your neuro say when you decided to stop treatment? Did you start off as Relapse Remitting, and did you have any of the symptoms you have now originally? If I'm over stepping, please don't hesitate in telling me to shut my gob!

My mam cried (as mammy's do) when she heard about the MS and the first thing I said is 'well, at least if I end up in a wheel chair I can get a nice pink sparkly vanity plate'. Needless to say she was not amused....

I had an MRI (with contrast) back in march, that was during an admission for 5 days of IV steroids. That MRI didn't show up any further lesions, however my attack as they say was "consistent with an MS relapse". This often happens, sometimes the lesions don't show up for months after an attack, hence why I will be having another MRI in St Vincents shortly.

Yeah I did start off with Relapse Remitting MS, over the years it has become quite consistent......less good days:mad:
With regards to my consultants reaction to me quitting Tysabri......she understood my problems with the drug when I showed her a picture of my swollen face. I do still have all the original symptoms, just with a load of recent ones.

longjohnn

This is a good thread and I will be watching it. I was just wondering has anybody mobility problems due to ms and are they on any particular drug that they can seriously say is making a difference...Thanks

val444

Hi all

Longjohnn, I am so sorry to hear of your experience. I don't have any recommendations for a neurologist, I have only seen the one, but I have already learned that you need to make a fuss to be listened to. I had a lumbar puncture in July, which really really hurt, and they didn't get any fluid. When it was rescheduled, thanks to the support and advice on boards, I insisted on both x ray guidance and valium, and it was a breeze.

One thing I am very grateful for is my GP. I went to her with very slight symptoms, more to put my mind at rest than anything, and I am very thankful that she took me seriously. She is a great doctor, and really thorough.

I have really not been worrying about the diagnosis much at all. I am very good at putting things out of my head until absolutely necessary. My mom calls it, "finding a place for things". I do think that it is important not to make any one part of your life your primary focus. If I have MS, and all doctors seem pretty sure that I do, I will somehow find a place for that too.

I have always been the strong one, the one who can cope, and I feel like my body is letting me down. I have found myself almost bargaining, deciding what symptoms / disabilities I could cope with, and which ones I really really want to avoid. My vision is important to me, and I have always been artistic, and I love to drive, and I want to have kids, and I am currently doing up my new house, and I love my job. So I have found myself saying, well I could cope with lhermitte's sign, but not with optic neuritis... But what use is it? I am a very organised person, and the unpredictability is what is getting to me most, when I allow anything to get to me at all!

I have thus far only told my parents, sisters, fiance, and best friend. I have a wonderful extended family and a fabulous group of friends. I know they would all be amazing, and incredibly supportive, but I feel sick at the thought of telling them this. How did the rest of you break the news to people? How did ye tell employers? I feel like I should be open about it all, because the secrecy is harder, but once it's out, it's out.

Sorry for the length of this!

LegacyUser

I have thus far only told my parents, sisters, fiance, and best friend. I have a wonderful extended family and a fabulous group of friends. I know they would all be amazing, and incredibly supportive, but I feel sick at the thought of telling them this. How did the rest of you break the news to people? How did ye tell employers? I feel like I should be open about it all, because the secrecy is harder, but once it's out, it's out.

I would keep it that way tbh, until if it gets worse and becomes obvious and changes what you can do compared to what you use to do. Tell employers last if at all, they have no business knowing unless its affecting your work.

LittlemsSkelly

Hi all,
LongJohn I was both a private (no health insurance) and am currently a public patient. I decided it would be quicker to just pay and get it sorted, then it turned out to be MS so an illness that lasts a lifetime...not really something a student can afford! I can PM you the names of the 3 neurologists I have seen ( 1 private,2 public ) and I can honestly say, the level of competency and professionalism I received from each has been outstanding.

As Val said, make a fuss! It's the only way you'll be seen, taken seriously and treated. When I first went in to the neurologist (private), he mention hospitalisation, in the future if necessary but the optic neuritis was clearing up, I still couldn't see a thing. The only reason I was bumped up from my original appointment of April 2011 to being admitted to an in patient in Sept 2010 is because I went to see my GP because I was getting the same ON pain in my left eye and he sent me straight in to the Mater hospital, where the astounding and magnificent Ophthalmic specialist was shouted at by my mother and the two of them ranted about the state of the healthcare system and I was admitted 20 minutes later and a very impassioned speech about how he was sick of seeing this happen, and he had the power to change it. My mam and I are in love with this man if you can't tell....:rolleyes:

I've never heard of one specific drug being better or worse than others TBH. Have you looked into drugs trials? St. Vincent's hospital were beginning drug trials with super high doses of vitamin D a while back for those with suspected MS or what would be considered one or two clinical attacks, first neuro tried to get me on but then I got diagnosed so fast there was no point. I would look into that because as far as I'm aware St Vincent's is THE MS hospital, a lot of research going on there now.

LittlemsSkelly

Val I forgot to respond to yours! I'm slowly going mad, I swear!

I have said to my boyfriend on so many occasions if I get ON one more time, I will lose it. I've had it 3 times since April 2010, and I'll be completely honest since that's what this threat is about, it hurts. You might not know where exactly your optic nerve is now, if you get it, you can pin point it, it is painful, but it is treatable. I was one of those fortunate 15% of people who get it i both eyes at the same time, and I couldn't see a thing, my vision is absolutely perfect. Steroids to my are the single most miraculous creation (by the body or otherwise) although the oral taper in the days following the IV steroids turn you into the energiser bunny. Oh, my pupils are sometimes different sizes, that's the only remaining damage and it doesn't affect me, just looks a bit strange in photos.....

This won't be very uplifting for the menfolk so look away now......
If you were young, I think 19 - 35 getting diagnosed, if your initial symptoms were visual (i.e double vision, ON, nystagmus) or had vertigo, had a low amount of lesions on initial MRI or few or no changes on subsequent MRI's and you're female, you're long term prognosis is excellent. You just need to hold on to that frame of mind. Not every person with MS will develop ON, similarly not everyone will develop weakness.

You are 100% right in saying it's the unknown that's scary, what the hell is going to happen? if I put off having kids for 10 years, will I then be fit and able to have kids when I want to?

I'm in a very similar boat to yourself, I want to have children someday, I want a career that I love when I get my degree finally, but I am the single most stubborn person you will ever meet. Even I think it ridiculous. I chose to continue working through beginning treatment, the only time I took off work was the time in hospital, and the IV steroids (they send you home with the IV in your arm, not good in a supermarket) and there have been times when you are so exhausted you just need to sleep. I have told people and work because I genuinely didn't mind people knowing.
Val, you say once its out, its out. I have found that if you are completely out straight with those who you want to know about it, tell them they can ask you anything they want, then there won't be a need to talk and gossip behind your back. You'll be surprised how little people actually know about MS!


I have had a rather positive experience with MS so far, and I will be honest when I say that the weakness symptoms absolutely put the fear of god in me and although I have never experienced any so cannot imagine what those of you who are experiencing them are going through, I'm so sorry you're having it so rough.:(

byhookorbycrook

In hosp,not ms related.trying to post from phone.great idea for a thread.will do my story when I get home to my laptop.

val444

I definitely think that the more open about MS people are, the less terrifying it would be to be faced with it. I am not ashamed of it, and I am under enough stress as it is, without the extra tension caused by keeping secrets. I am gonna wait until my neurologist appointment next week, but after that, I think I will just be open about it.

My mammy also cried when I told her it was a possibility. And so I ended up comforting her, when it should have been the other way around. I think one of the emotions I am finding difficult is guilt. I know it is nonsensical, but I feel guilty for stressing Mammy out, guilty because this isn't what my fiance signed up for, guilty because I am going to be worrying a lot of people...

I am young, my symptoms are slight, I am reasonably healthy in every other regard, I work for a company who I know will do their best to accomodate me in the future, and as already mentioned, I am surrounded by amazing people in my life, and I am so grateful. It is not that I would wish it on anyone else, but I kinda don't get why it has to be me!

I might just need a bit of a slap, to be honest. I am making myself out to be an awful whinge on this thread, but I am really a very positive person, I swear!

LegacyUser

Val444 wrote:

I definitely think that the more open about MS people are, the less terrifying it would be to be faced with it. I am not ashamed of it, and I am under enough stress as it is, without the extra tension caused by keeping secrets. I am gonna wait until my neurologist appointment next week, but after that, I think I will just be open about it.

My mammy also cried when I told her it was a possibility. And so I ended up comforting her, when it should have been the other way around. I think one of the emotions I am finding difficult is guilt. I know it is nonsensical, but I feel guilty for stressing Mammy out, guilty because this isn't what my fiance signed up for, guilty because I am going to be worrying a lot of people...

I am young, my symptoms are slight, I am reasonably healthy in every other regard, I work for a company who I know will do their best to accomodate me in the future, and as already mentioned, I am surrounded by amazing people in my life, and I am so grateful. It is not that I would wish it on anyone else, but I kinda don't get why it has to be me!

I might just need a bit of a slap, to be honest. I am making myself out to be an awful whinge on this thread, but I am really a very positive person, I swear!

All this sounds familiar to me Val been there, through it, the guilt is part of the process its 'natural' as are a lot of other things which you may or may not have to deal with emotionally either now or later on

As for telling the company or not, there is nothing to gain if you dont need to go into hospital for treatments and things like that. Obviously if the need arises then its better to be straight with them and fill them in, "I was in hospital because I have ms"
"we understand val..." ect

why tell them now??

dec7golf

hi guys,

i have read the posts here and understand the uncertainty and fear, the what if's ?
my wife was diagnosed with ms a few months before we were married 13 years ago, we have had our ups and downs with ms, and its progressed from relapsing remitting to progressive and to a mobility scooter, with different treatments in between ..
it's difficult at times for sure but i have to say what a great 13 years.

we have two wonderful boys aged eight and one, my wife has a great positive attitude,I don't know how she copes so well. sure there are times that it gets to us, and some times when it gets to her that she does not share so as not to worry me (and vise versa) but there is so much that's good and we're really looking forward to the future.

take care and stay happy ..

d

Fighting Irish

I was diagnosed in Sep 08, at that time i had vertigo(dixxyness when i leaned my head backwards) and blurred vision in one eye, i went into hos for 5 days to get IV steroids. I have been taking copaxone ever since, my last mri showed and increase of one more white dot on my brain. I'm doing fine at the moment, my balance is a little dodge but nothing i can't handle.

Anyone have CCSVI done?

LittlemsSkelly

Hi FightingIrish,

I never have had the CCSVI done, and had pretty similar symptoms as yourself (vertigo,double vision,a very attractive nystagmus that's now gone, and three bouts of Optic Neuritis) so everyone has been very assuring that te prognosis will be good. Then I'll stumble across some medical journal article stating the horrors of MS, read it, freak myself out, and only then realise that its a bloody journal from either the 70's or 80's.... and treatments have advanced significantly from then so happy days!

I empathise 100% with the vertigo and dodgy balance, vertigo from the MS which is horrible and if one more person had come up to me during that period and said 'how have you vertigo, you're not up a ladder?' Seriously!!! Dodgy balance now is just because I have two left feet, if there's a button on the floor I'll trip over it!

Dec7, it is lovely to hear that you and your wife have done and are currently doing so well together and congratulations on your children. I was only discussing the issue of children with my boyfriend yesterday and brought up the possibility of a wheelchair, and he simply said (this is honestly not a macabre and depressing as it sounds) he could be in a car accident and end up in a wheelchair, I could fall down the stairs and the result be the same. So to spend time worrying about something which despite our best efforts may happen through illness, accident, or not at all is pointless. We're together 6 years and engaged to be engaged. When I first got sick I gave him one chance to bow out, and still be friends and he's still knocking about so its a testament to the fact that there are decent men in the world such as yourselves. He gets a bit over enthusiastic about wanting to inject me though....an entirely different meaning to 'playing doctor'

Val, dodgy emotions are normal. A local clinic wouldn't take my sharps box but told me if I was a long term narcotic user I could participate in a needle exchange, I got off the phone and sobbed. I mean hysterically sobbed, my boyfriend walked down and thought I'd hurt myself the way I was carrying on. Still haven't lived that one down.....

You aren't coming across as negative, you're coming across as frightened, and you're allowed to be. But there is nothing to be afraid of,just take one little obstacle at a time and you'll be fine. I'm completely honest and open about it, makes jokes etc. with friends and family but my boyfriends brother is the most inappropriate person I have ever met. With his entire extended family sitting around, folding paper for mass cards for a funeral,I managed to do one bogey and he shouts out 'Give her a break, she has MS. Hey, are you gonna stroke out on us? Ahahahaha'. I just walked off before I clocked him with my poor MS fist...:rolleyes:

trishawisha

Well done on this thread! I have had similar experience to many who have posted...even the disposing of sharps. I brought my full box to local health centre only to have someone come and take it, open the bag it was in and query it in the waiting room in front of maybe 10 people.
I wonder have many people joined the MS society? I did and nothing much has happened until I got a letter yesterday inviting Newly Diagnosed people to a seminar in October. This is happening in Cork City if anyone is interested.
Keep up the good work

gronemeyer

Hi Longjohnn,

I got diagnosed with ms when I was 22 now pushing 27.

Took me a while to get around this whole thing. What I find helps if i'm stiff or loosing balance is bacalfen (as it I find relaxes the muscles), it also helps stop shakes or spasims if I anybody gets either when its cold or damp.

And what I can say to anybody who has been recently diagnosed and is thinking or feeling down because of it don't/try not let it beat you. At 22 I was on a walking stick and could barley walk 20 yards without needing a break (my first attack was quite bad I let it continue for weeks before I seen a doctor and after I did sink into a pit for months as people thought I only hurt my back because I was bottling stuff up, but when I was honest about it to people who didn't know I was shocked at how much support and help I got), since then i've learnt to walk 'freestyle' if you could call it that? I've done a lot of travelling and recently i've started playing contact sport again.

I do have plenty related problems still , but I try not let them beat me or dominate how and what I want to do in life.

You will have your low moments don't get me wrong(and i've had plenty and still do), just try keep as positive as possible.

byhookorbycrook

Diagnosed in 2001, shortly after we married.Ironically I had won the teacher prize in the MS readathon the year before. Little did I think then I'd learn an awful lot more about MS in the years to follow.

I don't attend MS society meetings, would be afraid to meet people worse than me.

I started on Betaferon but skin reactions moved me to Avonex. I had two relapses in 3 months so was switched to Tysabri. I am now about 3 years on Tysabri and relapse free. We were all tested for the JC virus last month so are awaiting results.

So, you can look at what I've lost or what I have.

I used to ride and compete at one day events/showjumping etc. Now it takes two people to get me up( on the small fat cob I now have who has the pateince of a saint) and I can only walk, trot and canter.

I used to train a football team and go to matches in Croke park, both no longer possible.

Now, I have a wonderful husband, good friends always willing to rally round,a straight talking gp and neurologist-both excellent.
(Can't bear wafflers esp when it comes to my health)
I can drive and I work.

So, it's glass half full/empty.

From day 1 I have made no secret of my MS.I am not ashamed and I don't want pity,but I do want a little understanding.

The very best of luck to everyone who has posted here. Stay well.

longjohnn

gronemeyer wrote: »

Hi Longjohnn,

I got diagnosed with ms when I was 22 now pushing 27.

Took me a while to get around this whole thing. What I find helps if i'm stiff or loosing balance is bacalfen (as it I find relaxes the muscles), it also helps stop shakes or spasims if I anybody gets either when its cold or damp.

And what I can say to anybody who has been recently diagnosed and is thinking or feeling down because of it don't/try not let it beat you. At 22 I was on a walking stick and could barley walk 20 yards without needing a break (my first attack was quite bad I let it continue for weeks before I seen a doctor and after I did sink into a pit for months as people thought I only hurt my back because I was bottling stuff up, but when I was honest about it to people who didn't know I was shocked at how much support and help I got), since then i've learnt to walk 'freestyle' if you could call it that? I've done a lot of travelling and recently i've started playing contact sport again.

I do have plenty related problems still , but I try not let them beat me or dominate how and what I want to do in life.

You will have your low moments don't get me wrong(and i've had plenty and still do), just try keep as positive as possible.

Thanks gronemeyer
I'll remember that drug as I do get shakes in the legs in the mornings but they are not bad and I am used to them. You are right you have to keep positive and I am, I'm just a bit pissed off over how hard it is to get treatment.

longjohnn

Fighting Irish wrote: »

I was diagnosed in Sep 08, at that time i had vertigo(dixxyness when i leaned my head backwards) and blurred vision in one eye, i went into hos for 5 days to get IV steroids. I have been taking copaxone ever since, my last mri showed and increase of one more white dot on my brain. I'm doing fine at the moment, my balance is a little dodge but nothing i can't handle.

Anyone have CCSVI done?

I had it done last Janurary in Poland with high hopes but it did nothing for me.I knew before I went that it might not help but my opinion was that if I didn't try it I would never know. Seems to have worked for loads though.

byhookorbycrook

Bit of light relief. My mother is always coming up with "cures" ,some from ICA friends and some from various newspapers and god knows where else.

So far she tells me I will be cured if I try any of the following:

• goat serum
• allow myself to be stung all over by bees once a week
• a certain "faith" healer
• swim with dolphins
• drink water for a particular holy well.

Anyone have any more??

longjohnn

LittlemsSkelly wrote: »

Hi all,
I can PM you the names of the 3 neurologists I have seen ( 1 private,2 public ) and I can honestly say, the level of competency and professionalism I received from each has been outstanding.

Hi LittlemsSkelly

God you have got it rough for a young person I hope you keep well. I would appreciate very much if you PMed me those names although I have a couple of names already.

longjohnn

I have another bad experience to share with you all. Two weeks ago my drivers licence was up for renewal and of course being honest I declared that I had MS. This required my GP to fill in a form which he did and someone picked it up for me. When I got the form back I noticed the only box in the licence classes on the form that he ticked was the car and for 1 year. I have a lorry and a coach licence so I assumed he had made a mistake in filling it because he had not discussed it with me so I crossed out his tick and put a tick in the lorry & coach classes and for 10 years.
Two days later I needed to ring the local Motor Tax office to ask for a receipt and they told me there would be a slight delay because they had to contact my GP.
A few days later the new licence came back and guess what it was for 1 year and for the car only. Ok I can live with having to renew it every year but losing the lorry and coach that I worked hard to earn I can't. Talk about kicking a man when he's down. There is absolutely wrong with my driving and even if there wasmy gp wouldnt know about it because he never asked, also I drive an automatic because my problem is with my left leg not my right.
I'm so annoyed I haven't spoken to the Gp yet but I intend to and at this rate of going he will soon be my X GP.
Has anybody had an similar experience.

byhookorbycrook

Got mine for 3 yrs, but I only drive a car. LongJohn, have you informerd your insurer you have MS?I get a letter each year from my neuro to say I'm fit to drive and always send it in. Maybe your neuro might be better placed to say whether you can drive lorries etc. than your gp?

ElleEm

I was diagnosed last Oct, and recently had to renew my licence and insurance. The insurance company refused a letter from my GP and would only accept a letter from my Neuro. Loads of hassle as my GP is great, and the Neuro seems to be on holiday every time I need her!!! At least I know for next year.

byhookorbycrook

I was one company who sent me a 16 pg highly personal and invasive form,the week before I was due to renew,so changed of course.

longjohnn

I don't intend to drive a lorry or a coach again but its the principle.

Lone Stone

Well my mother has ms about 11 - 12 years now but i remember her falling and stuff when i was a kid so i think she had it for a year or two before being diagnosed.

What kills me about ms is that their doesnt seem to be any thing out to stop it.
I use to try and find all kinds of treatments for her we got scammed out of a fund raising money for a stem cell treatment ( she had cow stem cells put in her) it was all over the news but me and my sis couldnt tell her, the worst part was on the news they said only a couple of people had it done around 6 i think they said but my mother was one and she never went forward how meny more oculd their have been. :mad:

Before that i found a thing called mitoxintrone took ages to get any word about it from the hospital eventually she got it done but turned out it involved steroids and she is illergic to those so it nothing happened, Helped her friend out tho his speach was very bad but after it i could hear a big difference.

So eh after that a few years later i heard about this ccsvi and told her she got obsessed with it we went for scans but i think they were the wrong scans done it privately, the hospital wouldnt talk to her about it and just kept dismissing it and brushing us off so i dunno its a hard thing to live with even if your not the one who has it.

has anyone tried ccsvi ?

val444

Hi all

So had my doctor's appointment. It is MS. I thought I was prepared for it, but I guess you never really are. I have been okay though, very calm considering. I do get this wave of panic every so often, but thus far have been able to push that back down.

My plan is definitely to be open and honest with people, and tell them that I have MS. Now if only I could get the words out...

I am going to meet with my manager this week and give her the heads up. I know I don't have to, but I really have felt that the secrets are harder. It will be nice not to have to watch what I say so much. Also, work pays my health insurance, so I guess the premium taking a massive jump next year would be telling...

How did ye all manage telling friends and family? Do you have to inform insurance companies immediately? For Life Assurance and Motor Insurance? What do you need to do about your driving license? Can I just wait until I need to renew it? Obviously if I ever feel like I can't drive, I won't.

Thanks all.

byhookorbycrook

No, nothing ever prepares you for it and just wait until the "ah sure it could be worse it could be..." crowd land on you!!!(All of whom are in the whole of their health,of course...)

Any word on starting a treatment?

Health insurance shouldn't jump.Mine is €750 per year-and my tysabri is €2,500 per month, never mind MRIs and all the rest:D:D
Driving liscence,unless you are very bad, stays until it expires, at least that's how mine was.

You need to notify your car insurance though,asap, or else they might try to weasel out of any claims, even if MS nothing to do with it. My crowd are happy with a letter from the neuro to say I'm fit to
drive, ask when you ring them.

Welcome to our exclusive little club!

val444

Thanks!

I have informed the manager at work. I was careful in choosing who to tell, but deffo made the right choice. I was looking for someone to take the information, process it, and be lighthearted and appreciate my tongue in cheek humor about it. If I had chosen someone else, my worry would be that they would be overly concerned. I am not looking for a hug like!

I also let my mammy tell her sister. She knew there was something up, but not exactly what, and I really feel like Mum needs to have someone she can talk to too, Dad and I are too busy making jokes about things to be able to have a serious conversation with her.

I think my fiance is waiting for the inevitable meltdown, but I have been cheery enough thus far. I had a bit of a fight with my friend about it, which wasn't fair. I felt like she didn't care, but I dunno what exactly it is that I want from her either. I know I have the rest of my life to be telling people, but I kinda want it to be over with, so that the world knows why my left hand is stupid, and it can just sink into the collective memory.

No word on which treatment. Next neurologist appointment is not until December, but she is gonna ask the MS Nurse to talk to me about options. I have no idea what to do, but I know I deffo wanna do something.

How did ye decide? Did ye get much guidance from the neurologists?

byhookorbycrook

No MS nurse when I was diagnosed, not sure if there even is one now where I am. My neuro is excellent and I was very much guided by her.The thing with MS is that every single case can vary wildly,so one course may not resemble another except in name.

I make no secret whatsoever, for example some people who hadn't seen me in a good while saw the process it now takes me to get up on the horse during the summer. I think I may have shocked them somewhat as they thought I'd done my back. Actually, for a finish, I think I was nearly sorry for them, as they really weren't sure what to say:p I answer all questions honestly as much as possible, except in the very rare case of a nosy auld biddy who is just being nosy...

LegacyUser

byhookorbycrook wrote: »

my tysabri is €2,500 per month

you serious! :eek: wow as in thats what it costs the hospital every month, crikey! some kind of source would be good for that too if you can provide?

val444

I do find it odd that I won't be choosing a medication until December. It seems a bit strange that after all the tests etc, happening so quickly, and then a definitive diagnosis being made, that I wouldn't start straight away? But then I guess the neurologist knows better than I, so I will leave that up to her!

The one thing I am finding difficult is the fatigue. Does anyone have any tips on this? I find that by about 3pm, I am practically asleep at my desk, and I liven up then again a bit in the evenings. It brings a new meaning to the idea of the 3pm slump!

trishawisha

Hi Val, when I got definitive diagnosis, it was like; ok well there are 4 drug options, take away info and read them all over the weekend, and ring on Monday with your decision and we'll get the ball rolling. Very fast, it took 2 weeks then for the nurse to come visit to show me how it was done.
December seems a good length of time. My neurologist said nowadays as soon as diagnosis is made they want patients to immediately begin treatment.
I didnt like how I had to decide which drug to take though. It was like ok they all have downsides, you must choose for yourself what you can put up with.
Btw I'm on copaxone
Fatigue is and was my biggest symptom, I have not found any relief only to make sure to get a good nights sleep.

val444

Hi trishawisha, thanks for your response.

What exactly is the MS Nurse? What does he/she do? Do they actually call to you? I am baffled by this to be honest. The neurologist just kinda said, we will ask the MS Nurse to contact you, and I will see you in December. It has been a week, and I have not yet been contacted.

Also, when exactly is it decided that the particular set of symptoms you are experiencing require a stay in hospital, or steroids? I asked a lot of questions on Friday, when I was given the diagnosis, but my head was obviously all over the place, and I keep coming up with more things I should have asked.

Thanks!

byhookorbycrook

A relapse usually means a hospital stay for steroids.My relapses where when a leg refused to move in any controlled fashion. (Broke a toe on my "good" leg when left leg wouldn't move and I fell:rolleyes: )

trishawisha

Hey Val, I was just as confused as you are only a few months ago.

Im changing to a public neurologist in Feb to CUH and Iv heard they have a couple of nurses there so also the ms nurse your neurologist may have been talking about could be to do with the hospital you are attending.

The "ms nurse" Im talking about is when you choose what medication, ex copaxone, the neurologist contacts the drug company and they organise for the nurse employed by the drug company to start you on the meds. So she/he will ring every once in a while to see how your getting on, she will also visit a few times. They are there at the end of the phone if anything goes wrong with regards injection reactions. Copaxone has around 600 patients in Ireland and for that they have 6 dedicated nurses.

I have not had a hospital stay so I dont know what would qualify a relapse and hospital stay.

MS.ing

val444 wrote: »

What exactly is the MS Nurse? What does he/she do? Do they actually call to you? I am baffled by this to be honest. The neurologist just kinda said, we will ask the MS Nurse to contact you, and I will see you in December. It has been a week, and I have not yet been contacted.

Also, when exactly is it decided that the particular set of symptoms you are experiencing require a stay in hospital, or steroids? I asked a lot of questions on Friday, when I was given the diagnosis, but my head was obviously all over the place, and I keep coming up with more things I should have asked.

Thanks!

Think of the MS nurse as a gateway to seeing the neurologist. if you had a hospital stay after or at the time of your diagnosis then usually the MS Nurse will see you and introduce herself tell you about the meds which they advise you to consider and make your choice from. She could have been on holiday then [as mine was!] so will see you when she gets back. She is a member of the neurology department and is a nurse specialist for MS. She will be the one arranging your scan viewing results and the one to contact if you feel you are having a relapse and will sort you out and calm your worries or get the neurologist involved.

The nurse which shows you how to use the needles and tells you about her companies medication is completely seperate from the hospital and is a one off type visit to get you comfortable with injecting and answer any questions surrounding it.

LittlemsSkelly

Hi all,
I escaped to london for a few days so apologises for the absence, such an exciting life I lead :rolleyes:
Delighted to see the thread is still going and hope everyone is well.

The car insurance issue, I still haven't told mine....big faux pas but I'll have to. Don't want some a$$hole crashing into me then blaming the fact I have MS on their incompetent driving! It's against the law to give you a higher premium unless you have modifications or the like done to you're car but it happens all the time according to my nurse so I'll be looking forward to that battle!

Whoever wanted to know about the MS nurse (there's been alot of activity here since I've been gone!) you get two. One, as some mentioned is your liaison to the neuro, the other is a nurse for whatever drug you choose to go with. I have two amazingly scary but wonderful nurses, Jackie and Martha who I absolutely adore. If my ass needs a kicking, they are more than happy to oblige. I'm on betaferon so Martha comes out to my house every month or so. It was more often when I started treatment at Christmas but I've had no reaction. So the gist of the home visits are really just to inspect injection sites, make sure you're being as clean as possible, monitor any and all skin reactions for possible signs of necrosis and just sit and have a yap and see how your doing.

Val, sorry about the DX. But welcome to the MS club, in the very least the stories and people should be giving you hope for the future. With regards to the meds, your best bet is to spend some time trolling the internet. Find the good points and bad to each of the injections and make yourself a list. There was only one that I was adamant I wouldn't go on after doing the research. Everyone is different though, you can read 10 medical journals stating benefits/drawbacks to each, read 100 peoples stories about what its like for them, then your completely different. For what its worth, I chose Betaferon because it's been on the market the longest, very thin needle, minimal flu like symptoms, auto injector compatible and doesn't need to be refrigerated. Downside is some people do get very bad skin reactions and need hospitalisation (very rare), you need to make it yourself but its so simple I could do it with my eyes closed at this rate, and needs to be injected every second day. Two ibuprofen will avoid any flu like symptoms for me though, I don't bother with the paracetamol aswel.

The relapse issue, I have been hospitalised once for IV steroids and tests ( yeay Lumbar Puncture and MRI...:rolleyes:), the second time was for the optic neuritis and I thought they would keep me in, but the Mater neurology suite have and outpatient infusion centre so I got my IV steroids while avoiding the crazy aul ones on the wards.

For fatigue, I just drink bucket loads of coffee. My neuro mentioned provigil, like legal speed, to combat fatigue but never heard anything more about it. So you could try mentioning that to your neuro but apparently its only used for people who have narcolespy and they don't want this drug going off script so maybe that's why. Couldn't hurt to ask though...

Why are all my post like essays.....?!:D

The Dagda

Hi, sorry if this is off topic but has anyone here ever called in serious illness cover on MS?

bnt

Here's some interesting MS research news:

A dietary supplement similar to glucosamine appears to suppress the damaging autoimmune response seen in multiple sclerosis (MS) attacks, raising hopes of a new metabolic therapy for autoimmune diseases. Researchers from the University of California, Irvine (UCI) in the US found that oral N-acetylglucosamine (GlcNAc) stopped abnormal T-cells from growing and working properly: in people with MS, these abnormal cells incorrectly tell the immune system to destroy the tissue that insulates the nerves.

Sounds like it would be a bit cheaper than Tysabri ...

mikom

Quick query, and I don't want anyone incriminating themselves if they are posting with anything like their real name.
Have any of the MS sufferers here ( or ones you know) tried cannabis to ease their symptoms.
I have met two MS sufferers who swore by it as an aid to sleep, preventing restless legs and the like.
There is one other MS sufferer I know who found no relief using it.

Cannabis has been proven, for the first time, to be an effective treatment for the symptoms of multiple sclerosis (MS).

http://news.bbc.co.uk/2/hi/health/662254.stm

bizmark

27 year old guy i was diagnosed last year been a very rough 8 years though before hand this will be long..

Iv basically been hold up in my home for the better part of a decade due to fears and hang ups primarily revolving around a skin
condition i have which appeared on my face when i was a teenager 18 or so i was already suffering from some confidence and personal issues and that basically caused me to retreat into myself i chose to be a fool and hide take the easy option for a number of years my life basically stopped my world was a couple of small rooms and a pc screen..
Maybe 2 years ago i started to go out late at night or early in the morning for cycles and then more "normal" times around midday in the country side i was scared of it but i kept going i still couldn't deal with people though i would panic and the idea of going in town or voluntarily putting myself in any kind of social environment terrified me still i was exercising and getting used to being out on my own terms eventually i was cycling 15-20 miles a day early in the morning lost weight became fitter and happy
.. then MS hit me just after my 26th birthday (1 month after) i lost the use of my arm and leg on the right side it took me 3 weeks of constant prodding by my family and 1 very special friend to eventually get me to work up the courage to deal with the hospital what needed to be done 7 days of the most invasive horrible things that could happen to someone who was scared of social interaction and suffering from "self image" issues could endure
Prodding and injections and lumbar puncture followed by MRIs people walking in and out having to deal... but i did deal with it and the hospital set me up with a little help that was a year ago now i can go in town jump on a bus go shopping generally function on my own started a fas course recently simple one but i wanted to see if i could deal with it last week of a 5 week course coming up and i loved it was nice to be around a group of people again none of my fears came to pass.

Guess what that long rambling storie means is that even though the last few years cumulating in a serious illness that will now also be a perminate feature to endure on top of the other "problems" iv been suffering from which haven't and of course cant be fixed they don't ultimately matter its all a state of mind you can decide that your life is awful or over or nothing will improve or that worse case is all you can look forward to or you can decide right
this is what i have these are the mistakes iv made these are my stupid decisions but you can fix nearly anything and you can deal with pretty much anything amusingly sometimes it needs a kick in the ass and some important people to make you understand that.

Now even though i cant cycle 15 miles any more i have an upper limit of 3 miles walking (not bad really) i have a near perminate and annoying weakness on my right side and the ms drugs i was put on made my life hell for 9 stright months till i was taken off them recently even with all that i Guess in a way ms is my Saviour strange as it sounds.

tbh health isnt physical strength its not perfect skin its not the ablity to walk 27 miles a day its all in your mind we all need to remember that

byhookorbycrook

mikom wrote: »

Quick query, and I don't want anyone incriminating themselves if they are posting with anything like their real name.
Have any of the MS sufferers here ( or ones you know) tried cannabis to ease their symptoms.
I have met two MS sufferers who swore by it as an aid to sleep, preventing restless legs and the like.
There is one other MS sufferer I know who found no relief using it.



http://news.bbc.co.uk/2/hi/health/662254.stm

Haven't done myself, but a few friends have, split 50/50 between helping/hindering. If the HSE approve the Savitex, I presume users couldn't drive while taking it?I'd die if I couldn't drive!

MS.ing

mikom wrote: »

Quick query, and I don't want anyone incriminating themselves if they are posting with anything like their real name.
Have any of the MS sufferers here ( or ones you know) tried cannabis to ease their symptoms.
I have met two MS sufferers who swore by it as an aid to sleep, preventing restless legs and the like.
There is one other MS sufferer I know who found no relief using it.



http://news.bbc.co.uk/2/hi/health/662254.stm

this annoys me and others, you dont suffer MS, its a disease, suffering is a state of mind and your perception. some People with MS do suffer too, but so do people with depression and cancer and most other LTI's
I HAVE MS, and I do suffer, but Im not an MS sufferer!!

mikom

byhookorbycrook wrote: »

Haven't done myself, but a few friends have, split 50/50 between helping/hindering. If the HSE approve the Savitex, I presume users couldn't drive while taking it?I'd die if I couldn't drive!

The info sheet on Sativex.

This medication can impair mental and physical abilities. You should avoid driving, operating heavy machinery, or engaging in activities that require mental alertness when using this medication.

MS.ing wrote: »

this annoys me and others, you dont suffer MS, its a disease, suffering is a state of mind and your perception. some People with MS do suffer too, but so do people with depression and cancer and most other LTI's
I HAVE MS, and I do suffer, but Im not an MS sufferer!!

Fair enough.
Far be it for me to argue semantics.
*Backs out of thread slowly*